For most people, a urinary tract infection (UTI) is a short-term inconvenience. A few days of discomfort, a course of antibiotics, and life resumes. But for Cairns mother and former wedding photographer Amy de Reus, what started as a simple UTI after the birth of her daughter turned into a life-altering chronic condition—one that left her housebound, unheard and forced to become an advocate for change.

Creative freedom to medical mystery

At 37, Amy was living her best life. She and her husband ran a successful wedding photography business in Far North Queensland.

Amy and her family spent every moment possible in the outdoors, enjoying nature and exploring new places.  “Life before chronic UTI felt open and joyful, full of connection, purpose and freedom. But all of that changed in 2019,” she says.

Shortly after giving birth to her daughter, Amy developed a fever, flank pain, night sweats and frequent urges to urinate.  She instantly suspected a UTI, most likely from a catheter used during her hospital stay. Her GP prescribed a short course of antibiotics despite a urine test showing no bacteria.

“I didn’t question the diagnosis at the time, as the antibiotics quickly resolved my symptoms.  Little did I know that this would be the start of a very long road ahead.”

 The symptoms nobody believed

Over the next four years, UTIs became a recurring part of Amy’s life, often triggered by intimacy. She describes the episodes as beginning with a deep cramping ache in her bladder—more like menstrual pain than the familiar “burning” most people associate with a UTI.  Antibiotics always relieved her symptoms.

But in early 2024, things took a turn. The infections started arriving more frequently and became harder to treat. “Every week it came back. Antibiotics would help, but then it would return again. We eventually stopped being intimate just to break the cycle,” she says.

On July 20, 2024—a date she remembers well—Amy experienced incontinence upon waking.

From that moment, Amy’s symptoms worsened dramatically. She was urinating every 30 minutes, day and night, battling bladder pain, spasms and urgency. She saw a GP at another clinic who told her antibiotics would not help because her urine test was “clear”, there was no infection.  Instead, he referred her for an ultrasound, which found no abnormality.

“I was told it was probably an overactive bladder, and I didn’t need antibiotics.”

By then, her infection had gone untreated for weeks.

A failing health system

“Since that July morning, I’ve had symptoms every single day and I have been completely housebound and bed bound for weeks at a time,” she says.

Today, Amy experiences a staggering list of symptoms: severe urinary frequency, nocturia (up to ten times a night), reduced bladder capacity, vaginal pain, insomnia, fatigue, loss of appetite and even a strange vibrating sensation in her bladder.

But perhaps the most painful of all—being disbelieved.

Diagnostic difficulties

“I saw eight different doctors before I finally got a diagnosis of chronic UTI from a urogynaecologist who understood what I was describing. The other doctors told me my tests were ‘normal’ even when I was in severe pain.  I was told maybe it was anxiety, or pelvic tension or interstitial cystitis (an incurable, non-infective bladder condition),” she says.

Chronic UTI remains poorly understood in mainstream medicine. Standard urine tests, which most GPs rely on, are outdated and often miss infections that hide in the bladder wall or form biofilms. For patients like Amy, the failure to detect these infections leads to misdiagnosis, stigma, delayed care and ongoing, life-altering symptoms.

Treatment barriers in Australia

Even after receiving a diagnosis, treatment hasn’t been simple. While most people with chronic UTI struggle to access appropriate treatment, those lucky enough to find a knowledgeable health practitioner are often successfully treated with a protracted course of antibiotics. Unfortunately, Amy has had adverse reactions to nearly every antibiotic prescribed—rashes, breathing issues, gastritis, even oesophagitis.

“Eventually I was told I couldn’t take oral antibiotics anymore,” she says.

Left with few options, she has recently turned to an overseas clinic that provides a novel treatment for infectious diseases—phage therapy. She says this therapy has been helpful, but she’s been unable to access it in Australia.

A mother, a fighter and an advocate

Despite the isolation, pain and fatigue, Amy has refused to stay silent. In July 2025, she helped launch a national letter-writing campaign, urging Australians to contact their MPs and demand government action on chronic UTI.

“After connecting with others in support groups, I realised chronic UTI isn’t rare—it’s just unrecognised. Women everywhere are being misdiagnosed and dismissed,” she says.

The campaign calls for:

• A national review of outdated UTI testing methods
• Serious funding for research and development of safer and faster treatments
• Updated clinical guidelines and medical education on UTI diagnosis and treatment
• Government recognition of chronic UTI as a public health and gender equity issue.

Her inspiration came from the UK, where chronic UTI was recently debated in Parliament. “It’s time for our government to take action—we can’t wait any longer,” she says.

What Amy wants you to know

“Most people think a UTI is no big deal. They don’t realise how destructive it can be when it becomes chronic,” she explains. “I’ve lost my career, my freedom, my ability to parent the way I want to. I grieve that life every day.”

Despite her losses, Amy’s ordeal has had some positives.

“I’ve learned I’m stronger than I thought.  I never imagined I’d be someone writing to MPs, learning about microbiomes, or importing medicines from overseas—but I’ve had to become that person,” she says. “I can hold both grief and determination at the same time. Even in pain, I can still be a mother, an advocate and someone with a voice.”

A call for change

In February 2025, the Urological Society of Australia and New Zealand (USANZ) formally recognised chronic UTI as a valid condition that may be undetected by standard urine tests. But according to Amy, that recognition hasn’t yet translated to meaningful change.

“We need practice to catch up with policy,” she says. “Women in this country are suffering in silence. We have the science, the evidence and the patient voices. What we need now is government action.”

Amy is working with the national patient advocacy group, Chronic UTI Australia, on a campaign to make government decision-makers and the public aware of the need for change. The campaign provides tools for various forms of action, from sharing personal stories to writing letters to parliamentarians and the federal health minister.

Amy urges other chronic UTI patients, and anyone affected by this condition, to support the campaign.

“You don’t need to have the perfect words,” she says. “You just need to show this matters.  Every single voice makes a difference.”

To learn more about chronic UTI and how you can help, visit: www.chronicutiaustralia.org.au/take-action/